AAC Parents Google Group

Re: aghhh, hope? LONG

dcaldwell...@comcast.net (Dawn Caldwell) — Tue, 22 Dec 2009 21:53:27 UT

Hi Ana,
I apologize - I haven't been reading all of the emails. I've tried to reply once to your email but didn't send it as it was so bitter (about our situation) that I thought it wouldn't be overly helpful to you.
I can totally empathize with the desire to go somewhere where the services might be better, where the grass might be a little greener and living seems a little easier. :) There are many times that I have envied Robin for her early introduction to Katya that led to her children going high tech/high location quickly and for having teachers in the family that helped. There are many times that I have envied those who had access to literacy programs specifically designed/tested with children like mine, i.e., Dr. Light. I've envied those that could access the Bridge School. And, I've envied Schulyer's dad for having access to a public school with a heavy AAC bent. But, while those places/circumstances exist, it wasn't in our realm - either due to Mason, family, finances or other issues.

Re: Trisha

dcaldwell...@comcast.net (Dawn Caldwell) — Tue, 22 Dec 2009 20:48:25 UT

What a wonderful Christmas gift you've been given early! Great work on everyone's part. Dawn
----- Original Message -----
To: AAC Parents
Sent: Sun, 20 Dec 2009 18:34:42 +0000 (UTC)
I just wanted to share what to me is a very exciting milestone for us.
The other day I went to Trisha's room to take her some tea. She looked at me and said/signed Mama Carol and then signed I love you. That is the very first time she has ever signed that to me before on her own with no prompting and out of the blue like that. She has been verbalizing more and signing much more since the Sign Assistant has been working 30 mins direct 1-1 with (her in addition to her 4 hours of indirect working with her daily as in showing her signs when needed, interpreting for her as needed etc.) She is also using 2 word utterances most the time now and even 3-5 word sentences more and more often. I also created an interactive board (page) on her laptop called "My Classroom" where she can go to check the time, choose her lunch, check her schedule, or request her communication notebook, tell if her hearing aids are not working, if her glasses need cleaning, if she has to go to the bathroom, needs a tissue etc. While the school has been working more on the device they are still using it like a pre-made program in other words at this time we will work on the board so I am trying to get them to use more functionally and naturally. When I added the My Classroom they loved it and now encourage Trisha to go there more often it also has a link to other boards so she isn't limited to just the few things I have put on so far. What I think made a difference is 1. it was simplified enough for them to use it, 2. they loved how it looked like the classroom, 3. the clock was in real time which just amazed them for some reason and finally I think the visual scene is as important to the TAs as it is to Trisha. I will be adding more visual scenes as we go along and get more pictures. They thought it was so cool when Trisha clicked on herself and it said I want and then she clicked on ham-cheese-sandwich. I guess Trisha isn't the only one who likes the special effects for want of a better word. So, if we make the boards interesting for our kids and the ones working with them we may have been chance of them using it. The TA recently saw a play that had interpreters for the whole play and that also helped her to understand how important all modes of communication is. She said she was excited when she would watch the interpreter and realize she understood some of what was being signed. The staff working with Trisha get the advantage of learning more signs since the signing assistant is there all day with Trisha and her team. At the old school they always had her turn her device off if they used it at all instead of leaving it on and I am happy to say that at the new school they have finally re-trained her to leave it on all the time now so it's faster to interact using her device now. Slow progress but progress all the same.

Re: Trisha

ebunn...@gmail.com (Ebunny59) — Tue, 22 Dec 2009 17:12:09 UT

AWESOME! I always say, it just takes the one thing, that gets their
attention, to get them to use it.
The past two weeks, it has been VERBS for Kendra. I just sent in a
paper, asking them, hey, while you are looking up the verbs, tell me
the adjective and nouns you see while on the same page. I figure, if

Re: Trisha

hurd4k...@yahoo.com (Robin Hurd) — Mon, 21 Dec 2009 15:36:20 UT

what an awesome update!! I am so excited that Trisha is blossoming! hearing a spontaneous I love you is a present for a mom :)
how funny that the visual scenes are helping the STAFF to understand the device better. Whatever works :)
It's also great that Trisha has been able to be re-trained to keep her device on. It's hard to break a habit.

Re: aghhh, hope?

mcdalz...@aol.com — Sun, 20 Dec 2009 20:43:34 UT

Ana I wish I had the means to have you all come here but I don't. I
wonder who would...........your right we all have the same roles.........mom,
SLP, OT and PT and more. Please hang in there I know it seems like it is all
up hill but wait till you reach the top it is just wonderful........M-C

Re: aghhh, hope?

asaavedr...@gmail.com (Ana Saavedra) — Sun, 20 Dec 2009 20:23:57 UT

Well, I guess all moms in the world have to fight for their children´s
rights but in some countries you´ve achieved more. My dream is going to the
USA for a while because you have a lot more experience there at least as far
as CAA is concerned and I may have more chances to find someone who cannot

Re: aghhh, hope?

csvill...@gmail.com (Trishasmom) — Sun, 20 Dec 2009 19:20:48 UT

Ana,
I am so sorry that you are going through this but especially Pau is having
to go through it as well. Do these people not get how hard they are making
it on a child just because of their childish behaviors? I just don't have
patience with people who are capable of knowing better and yet choose to act

Re: aghhh, hope?

mcdalz...@aol.com — Sun, 20 Dec 2009 19:14:26 UT

Ana, If you don't mind I have a ? for you. When you say see when/if we
get to the states are you talking about the USA? What do you need to come
here? We do have rights here that I think myself I forget about........I
think this might be due to the fact that even with the rights it is a
struggle to get your kids what they need to learn and grow and thrive. I so wish

Re: aghhh, hope?

asaavedr...@gmail.com (Ana Saavedra) — Sun, 20 Dec 2009 19:06:39 UT

Pau needs a special type of toilet seating and he has that at home but when
he started going to this school daddy hand-made a provisional toilet that
they have been using for 5 years now. We have been asking for a proper one
every single year but they kept telling us that the one he had was fine. We

Trisha

csvill...@gmail.com (Trishasmom) — Sun, 20 Dec 2009 18:34:42 UT

I just wanted to share what to me is a very exciting milestone for us.
The other day I went to Trisha's room to take her some tea. She looked at
me and said/signed Mama Carol and then signed I love you. That is the very
first time she has ever signed that to me before on her own with no
prompting and out of the blue like that. She has been verbalizing more and

Re: aghhh, hope?

hurd4k...@yahoo.com (Robin Hurd) — Sun, 20 Dec 2009 17:58:57 UT

We have to continue having hope that our kids and those who follow us will be taught as they need to be. Part of having that hope is helping others understand what our children are capable of, and how to treat them with dignity.
I am so sorry to hear about Pau's school having problems with toileting him. How frustrating for him to be able to use the toilet, but not to have willing and skilled people there to help him with that. you mentioned that there had been a problem with toileting at school. Do they need some special equipment for him to keep him safe? (a special toilet, grab bars, a lift, etc?) Going back to diapers must've been so disheartening to him.

Re: aghhh, hope?

dstier2...@yahoo.com (Denise Stier) — Sat, 19 Dec 2009 16:29:58 UT

Hi Amy,
Have you ever looked into joining up with other parents who homeschool in your area? Where I live, there are homeschool groups who meet every week or so to do music, art, Phys Ed, etc, and to have time for kids to socialize. They do field trips to historic or educational places just like they do in public schools. That would eliminate your need to send Kendra to school for part of the day just to be around the typical kids.

Re: aghhh, hope?

asaavedr...@gmail.com (Ana Saavedra) — Fri, 18 Dec 2009 18:55:05 UT

Hi,
I haven´t talked to you for a while.
Amy I´m really sorry about Kendra´s situation at school. I thought this only
happened in Spain. Well, the fact is I decided to take Pau to school just
1/2 day two years ago and he´s definitely made a lot of progress at home
with a special ed teacher, OT and me doing the literacy and access to

Re: idea for those bathroom issues

hurd4k...@yahoo.com (Robin Hurd) — Fri, 18 Dec 2009 18:18:41 UT

that's a great use for this!!!! It ought to put a stop to it, just from sheer shock when the roll speaks to him :)
I know this was intended as a gag gift, but there are so many helpful behavioral uses for it. :)
Robin
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Sent: Fri, December 18, 2009 12:42:10 AM

Re: aghhh, hope?

ebunn...@gmail.com (Ebunny59) — Fri, 18 Dec 2009 17:45:13 UT

She does go half day, every other week for private therapy. It is
excused. I haven't suggested 1/2 day for a couple of years. I
thought back then, the spec ed director might actually go for it, but
the PITA principal wasn't crazy about the idea.
Yes, I still homeschool 2 kids, through an online school in our